Sasha’s Acute Myeloid Leukemia Story

Sasha shares how she got diagnosed with acute myeloid leukemia (AML) at just 24 years old. She describes undergoing chemotherapy and a bone marrow transplant, as well as recovering from both.

Sasha also highlights how she handled losing hair from chemotherapy, paying for cancer treatment (financial toxicity), and survivorship. Thank you for sharing your story, Sasha!

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This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

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Getting the Diagnosis

What were the first symptoms?

It started back in November. I was just a normal college student. I had my classes, going to and from school. At the time, I was helping my cousin out a lot with her daughter because she was working. I would be at her house pretty much every single day.

At first I started noticing some really small bruising. It wasn’t really bad, though. It was on my leg, on my arm. Just little places here and there.

My cousin noticed actually that they started to get bigger and more awkward spots, like on my toe, on my finger, or I would get a massive bruise on my stomach, and I didn’t know anything about it.

Then in the beginning of December, I had a really, really big bruise on my lower back. It looked like a tire mark, like a full on stretched-out tire had run me over. My cousin is a hypochondriac. She’s super afraid of everything, so she was like, “You need to go to the hospital now.”

I was reluctant, but I finally agreed to go. Her mom took me, and I was there for a few hours. After some blood work, they told me that I have a blood disorder, which was a misdiagnosis. They gave me medication. “If you take this twice a day, it will go away on its own.”

About a week later, on the night of December 10th, which was my birthday, I was getting ready for bed. I had taken my makeup off, and I was getting ready to lie down. I could not lie on my right hip. It was insanely painful. It was excruciating pain.

I jumped out of bed, and I went to the bathroom. I looked in the mirror, and my hip was swollen out. It looked like a bowling ball was inside my hip.

My mom had woken up because I had all the lights on, and she was like, “What’s going on?” I told her, and she was like, “Oh my gosh. What’s going on? What is that?” I had no clue.

What do you remember from the diagnosis?

I was really, really afraid. I got there about 3, close to 4 o’clock in the morning. We did blood work, and a doctor came in. I could tell something was wrong. He was acting very sad or very concerned.

He put his hand on my shoulder, and he goes, ‘I’m really sorry to tell you, but you have leukemia.’

My expression just went completely blank. I didn’t know what to say. I didn’t know what to do. It reminded me of one of those situations in a movie where they tell the actor the bad news, everything drowns out, and your vision goes blurry. I had that moment.

I didn’t think those existed until that moment. Just completely in shock.

For a second, I thought I was getting pranked or lied to. I was like, “This isn’t happening. This isn’t happening. There’s no way that I could get cancer.”

I was a normal 24-year-old girl in college, who had never had any illnesses ever — besides allergies, but that’s pretty common. Then I went from having a normal life to being diagnosed with cancer overnight.

I was completely alone. My parents were back home, and I didn’t have anyone with me. It was just me, 2 doctors, and 5 nurses.

How did you process the diagnosis?

I didn’t really get a chance to process it right away. It was more like a quick, “Okay, you have cancer. We’re gonna be doing non-stop testing on you for the entire day.”

As soon as it happened, the doctor asked me, “What time do your parents wake up? We’ll call them and let them know.” I was like, “Oh, about 8 a.m.”

As soon as he walked out of the room, I was like, ‘There’s no way I’m gonna let my parents find out from a doctor. I have to call them myself.’

»MORE: Patients share how they processed a cancer diagnosis

I was trying so hard not to cry because I felt guilty in that moment. I don’t like to be a burden on others. I wouldn’t say it’s a fear of mine, but it is something that I can’t stand — making other people feel bad about myself. I don’t want people to feel pity, I guess.

I told my dad. He woke up my mom. They immediately started crying. Then my 16-year-old brother woke up, they told him, and he started crying. I felt so bad. I didn’t even feel bad for myself for having cancer. I felt bad about putting the bad news on them.

I just felt this immediate wave of guilt. What have I done to my parents’ lives? I’ve made everything so much more harder on them. In that moment, I felt really, really stressed.

I felt angry and also just really upset that this happened to me because I didn’t want to burden my family.

»MORE: Breaking the news of a diagnosis to loved ones

Tests and Procedures

Describe the bone marrow biopsy

They told me that I was going to be having a bone marrow biopsy. I didn’t know what that was.

That really did help. But it was pretty terrifying for never having a procedure or a situation like that ever before.

Right after, they put some medication on it, and they put a little patch. You’re supposed to leave it there for 48 hours, and you can’t get it wet. It just falls off on its own pretty much after that. But I think the procedure in total took about 30 to 45 minutes.

What were the tests and procedures that followed?

After that they did a CT scan, then an ultrasound, X-ray of my entire body, and then an iodine solution. It was just nonstop testing the entire day.

The only time that I actually got to relax and sit down was that night after all the testing was done. They were like, “Okay. We’re gonna go ahead and leave you alone for a little bit. We’ll come back in an hour to do more testing.”

That was when I actually got the chance to be alone for a second and sit and think about what was happening. I was just like, ‘I can’t believe this is my life right now.’

I started my first round of chemo that night. It was pretty late, so it was probably like early morning the next day on the 13th.

Describe the bone marrow biopsy results

I want to say it was a full day. They told me that the type of leukemia I have is AML leukemia, which means acute myeloid leukemia.

Did you have to drink contrast dye for the CT scan?

Yes. That was the worst part. The dye was inside of this giant 2-liter bottle, and they wanted me to drink 2 of those in an hour. I can’t drink water very well. I completely forget to drink water sometimes.

It was nothing painful. They just had me drink the dye. Then they said, ‘Okay. Lie down for the CT scans.’

I went, and then they just had me lie on the bed. I think at certain points they had to tell you, “Hold your breath,” when they were doing the scan. That was okay. I got a little light headed, but it wasn’t anything I couldn’t handle.

How long did it take to get the CT scan results?

Those results came back pretty quickly. The doctor said that everything seemed fine from those, as fine as it can get when having cancer.

Is there staging with acute myeloid leukemia?

No. There’s only different subtypes. There’s AML leukemia, there’s AMM leukemia, ALL, etc. There are different types of leukemia.

Treatment Decisions

How did you decide where to get the treatment?

I didn’t really get to decide. Our local hospital has an affiliation with Scripps Mercy, so as soon as they found out that something was wrong that they couldn’t figure out, they just sent me there. That’s where I had my first round of treatment done.

Did you consider getting a second opinion?

No, not really. As soon as everything just happened, they’d told me that chemotherapy was the only way to save my life. I was in that mentality of, “Okay, well, let’s get it done.”

I didn’t want a second opinion. I didn’t want to talk to my family about it. I trusted the doctor. He was really nice. He explained everything to me; he explained what was going on, what kind of leukemia I had, what was going to happen, how I was going to get the treatments, stuff like that.

He told me, “Our best chance for you to survive this, or to get rid of it quickly, is to have chemotherapy.” And I said, “Okay, sounds great.”

Is there anything you wish you would have done up until this point?

Up until treatment, the one thing that I would say that I wish I would’ve done is talk to people more about my initial diagnosis.

I kept my feelings to myself. I didn’t tell my friends or family. I wanted to make sure they were okay more than I was okay, if that makes sense.

Now that I think about it, that was probably not the best decision. I should’ve actually sat with myself and come to terms with what I was feeling and what was going on. Instead, I just buried everything down. I don’t recommend that.

If you’re going through treatment or you just found out you were diagnosed and you’re about to go through treatment, talk to somebody.

Either a family member, a friend, a doctor — ask if you can talk to some type of social worker that they might have on staff or some type of counselor or something, because it’s definitely something that you should not keep to yourself.

It’s the hardest thing to ever have to deal with and keeping that all down. Trying to make sure everyone else is okay, it did a lot of — I don’t want to say mental damage, but it’s just something that’s really, really hard, and I would definitely recommend talking to someone.

Chemotherapy

Did you get a port or a PICC line?

I had a PICC line and I did my treatment, 24-hour chemo for 7 days straight. It was a lot for me to take in for my body, and it was through a PICC.

After that, my PICC got infected actually, so I got the PICC taken out. I went through the veins. My veins were kind of shot after that.

Describe the PICC line infection

It was about 2 or 3 days after the whole round of chemo. The chemo’s 7 days. The PICC was working fine. About 2 or 3 days after that, they were just using it for blood draws or if I needed medication for having a fever.

I don’t really know what happened. I’m pretty sure it got cross-contaminated, and I had to take the PICC out. They were like, “Well, you’ve already done your chemotherapy round, so we’ll just do the rest of it through your veins.”

»MORE: Read patient PICC line experiences

You had 3 additional rounds of chemo before the bone marrow transplant

After the full week of chemo, we had to wait for the results to see if the leukemia cells had gone. It was just mostly a waiting game. It took a while to get the results.

I don’t know why. They had done a biopsy right after the chemo, and I wouldn’t get those results until I think 2.5 weeks after. It was just a waiting game, and it was awful.

Finally, at the end of December, they told me that the chemotherapy worked and that the leukemia cells were gone, but in order for them to stay gone, I was going to need a bone marrow transplant. I was released in January, and I went back into the hospital at the end of March of last year.

When were chemo side effects the worst?

My first round in December was probably the worst because that’s when my hair fell out.

I remember at one point I had a really bad fever, and I was aggressively, severely shaking in my bed because I was so cold. My feet were still hot, my body was hot, but I was freezing and could not function.

No matter how much I covered up, they told me, “You can’t be covered up,. You’re gonna get hot.” I’m like, “Yeah, but I’m freezing.” It looks like a back-and forth-weird side effect with that.

That was really bad, but that only lasted for a week. It was just so aggressive. I lost hair, I had the really bad diarrhea, and then I had nausea and vomiting.

That round was probably the worst of the side effects. When I did the other rounds, it wasn’t the same chemo. It wasn’t as intense; it was a bit more mellow. Those things were just the normal side effects, which is just the nausea and vomiting.

What helped prevent or reduce the side effects?

For nausea, the Zofran really helped. They gave me Compazine. That helped as well.

Bone Marrow Transplant

Matching with a bone marrow donor

My brothers were tested in March, but neither of them were a match, unfortunately. They had to go into the donor system again around March or April. They found a donor in June, but they have to do all the paperwork, stuff like that, and the technicalities.

He had to actually go into the donate center, donate, and then they have to check you out or something and have it sent to my hospital. By the time I got the actual transplant, it was July 20th.

Describe the bone marrow match process

They told me back in December when I was still in the hospital during the first round that the chemo had worked and my leukemia cells were gone.

But the chemo had done such severe damage to my bone marrow that my immune system was pretty much gone. I wasn’t going to be able to produce any new cells, so in order to get back to where I was, I needed to have a bone marrow transplant.

They said that the best-case scenario would be if my brothers were a match. That way it could be quick and easy, done and over with. They tested both of my brothers, and they both came back negative. My brother Jacob was upset about it because he wanted to be a match and help me, but he [couldn’t].

They went ahead and were like, ‘We’re gonna put you in the system.’ I got the call in April when they told me that they had found a match, but because of all the technicalities, they had to sign in and make sure it was a private thing.

I don’t even know who the person is. All I know is he is a 21-year-old male from California. That’s all I know about him.

»MORE: Learn more about bone marrow transplants from a specialist

How long did the paperwork take?

It took from April to July, so about 2.5 months.

You ended up switching medical centers

I found out that the first place does not do bone marrow transplants, so they wanted me to go the UC San Diego Jacobs Medical Center.

Describe the prep before the bone marrow transplant

They called me in the end of June, and they told me that they were going to be prepping me and getting everything ready for the transplant in July. Around the end of June, they told me that they were going to go ahead and do more chemotherapy.

This chemo was different. It was chemo to prep my body for the transplant. It was 2 chemotherapies. One was the Cytarabine, and one had a different name. I can’t remember the name of it honestly. I’ve just done so many different chemos.

The first day of chemo was 24 hours, then a 2-day break, then chemo for 24 hours, then another 2-day break.

They also did blood tests. They had me do a breathing test. They made me blow into this thing, and I had to go to a certain level to make sure that my lungs were strong enough. They had me do a physical test. They had to test out my body mass, weight, height, and stuff like that to make sure that my body could support the new bone marrow.

All of that came back perfectly fine. They had me do an eye test to make sure my eyes were okay.

Describe the actual bone marrow transplant

It was more of a waiting game. I wasn’t sure if my family was going to be there or not. Luckily, 2 of my aunts and 1 of my cousins came, so I wasn’t completely alone.

They told me it was going to be very quick and easy. It’s kinda anti-climactic, honestly.

But we were just waiting around for the delivery of the blood, and then about 2 p.m., they finally came. They put the blood on the little thingy, and they hooked it to my arm. It was just slowly dripping for an hour and a half. Then it’s done and over with by like 3:30 or 4 o’clock. That was it.

What are the side effects of the additional chemo for the BMT?

I lost my hair again. That was the number one thing. I had already had hair growing back by that time. But because that chemo was so strong again, I lost all my hair. They shaved my head in the hospital at the beginning of August.

I just had really bad nausea and vomiting some days. Some days were really, really bad, where I couldn’t eat or drink anything for 3 days straight. Then some days were good, where I felt okay. I felt perfectly fine. It just depended on the day.

A lot of weeks had passed since the chemo, but the chemo was so strong that it was still in my system. There were just some days that my mom would make me something to eat. I would sit down, eat it, and the next thing I knew I was in the bathroom, or I was throwing up in the trash.

It just depended on certain days, because some days I was perfectly fine, I could eat whatever I wanted, and I didn’t feel sick.

After the Bone Marrow Transplant

What was the follow-up protocol?

I had doctor’s appointments with my oncologist, usually about once a week, and then I would go to the infusion center. If my magnesium level was too low, they would give me a magnesium transfusion, so that lasted about 2 hours every other day. That took quite a while.

Some days I needed more hydration because I was dehydrated that day, so I would do a hydration drip. I guess it just depended on the day. For most of the time that I was there, I needed hydration and I needed magnesium.

How often were you going to the hospital?

My mom and I were going 3, sometimes 4 days out of the week, sometimes 2 or 3, just depending on how my levels were doing.

Describe the bone marrow biopsy after the transplant

They did another bone marrow biopsy right after, maybe a month or 2 after. It went well. It was the same as all the other ones.

It was a little painful, but results came back that the transplant was working. It was doing its job.

»MORE: Learn more about bone marrow transplants from a specialist

How were you feeling when you learned those positive results?

Oh my gosh, I was so excited! I remember I was with my parents because they had taken me to lunch. The most recent one was in September, so it was just my mom.

My mom was with me, and I had a scan done. They told me that everything was going well, that the transplant was actually working, and that my new bone marrow was perfect.

I was just really, really excited because I was like, ‘I really hope I didn’t go through all of this for nothing!’ But no, everything turned out really, really great, and everything has been really good since then.

Are you in remission?

Yes, as of October 31st. That was whenever they told me that they have done all my tests and everything and I was perfect. Everything has been working really, really well, and I was allowed to move back home. I’ve been home since the beginning of November.

What’s the follow-up protocol?

My dad and I go to San Diego twice a month for follow-up. They do blood work and tell me, “Do you feel this? Do you feel that? Have you been feeling nauseous? Do you have diarrhea?”

• Immunization shots through 5 years
• Checkups twice a month

It’s been like that since November. Recently, my doctor said she was going to move it down to once a month, but then with the whole GVHD situation, she says she wants to continue seeing me twice a month. I do have this type of illness in my body, and she just wants to make sure it doesn’t get any worse.

Hair Loss

Describe the hair loss

It was probably about 1.5 to 2 weeks after the chemo had already ended. For the most part, my hair was up in a bun, so I didn’t really think anything of it.

Once I started actually taking my hair down, brushing it, that’s when I noticed that the clumps of hair were just coming out of the brush.

Then I remember one day, my parents were there. It was my mom, my dad, and my brother. We were all sitting around, and I couldn’t reach back to brush my hair. I asked my Dad, “Do you mind brushing my hair for me?”

He was brushing my hair, and they were literally just coming out in clumps. He just would brush, put [the clumps] in the trash, and say, “Don’t even look at it; don’t even think about it. It’s gone. You can’t do anything about it.”

I was just like, “Okay, don’t look. It’s all right. I’m fine. Just keep brushing. Just get it out,” because I had a lot of tangles in my hair. My mom’s sitting next to me, and she was in shock more than I was.

I think it was in that moment we all realized how real it was for us. Up until that point, it was just me, sitting in a bed and getting medicine. Once you actually see the hair starting to come out, it becomes more real.

This isn’t just treatment for anything. This is treatment for cancer. Your hair’s falling out. This is happening. I think it was kind of a shock to all of us.

»MORE: Dealing with hair loss during cancer treatment

Was it empowering to go out not covering your head?

Definitely. I had a little photo shoot with my brother because he had a nicer camera than I did. I did my makeup, and I wore my bald head. He took a few pictures, and I posted them. Everyone was like, “Holy crap, I have never seen a more beautiful bald woman.” I was like, “Oh my gosh, thank you!”

It definitely makes you feel good about yourself, especially when you feel like, “Oh my God, I look like a man!” Or, “I look this way.”

I would even have people come up to me in Walmart, and they would be like, ‘Hi, I know you don’t know me, but you look absolutely beautiful with no hair.’ I would just be like, ‘Wow, thank you so much!’

I feel like now that it’s growing, I have a harder time than when I was bald. Now that it’s growing, I can’t do anything with it. I can’t style it. It’s just there. When I was bald, I didn’t have to do anything.

I really hope that men and women out there, they shouldn’t feel like they need to hide behind [anything]. My problem was that I felt my hair helped me hide. I didn’t feel a certain way about my forehead or about my face, my chin. I would just kind of move my hair in front of it and be like, “Oh okay, looks better.”

But once you have nothing, you have to embrace your face. Embrace every part of it. Your nose, your chin, your double chin, your eyebrows, your forehead. You have to embrace it all and be willing to love those parts of yourself.

Was it harder to lose hair the second time?

Not really, in all honesty. It was going to happen. They had told me, “Oh you might lose your hair again.” And I was like, “Just shave it.”

It was this length, right now. It’s a little full. It’s getting there finally. It was at this length, and then I was sitting in my bed. I had noticed that I had little pieces of hair on my pillow. At first I didn’t think anything of it. I was like, “Maybe some eyelashes, or something else.”

Then it started getting more and more and more. It was everywhere. I was like, “I can’t handle this. I’d rather be bald than lose my hair like this.”

I called one of the nurses in and asked if they could shave my head right then. She goes, “Oh yeah, we have clippers!” She did it right in my room while I was getting chemo. She just shaved it again.

Honestly, it felt a lot better. Because I hate the feeling of loose hair. It drives me insane. You know when I had long hair, I would find my hair on everything. It used to drive me insane.

Having all that hair gone, my pillows would be free of loose hair. It felt a lot better, and I was okay with it. It was gonna happen sooner or later.

You lost your brows and lashes the second time around

That was harder for me. My eyebrows are a very big part of my face. I’ve got some thick, bushy brows that I get from my dad’s side. It was something that I really, really liked about myself.

I used to have really, really long, thick, beautiful lashes. They just slowly all fell out. I think I had maybe 4 or 5 on each eye. My brows were so thin that you couldn’t see anything, pretty much.

That was the harder part for me, because the first round I didn’t lose anything but my head hair. Then this other round, I lost my head hair, my brows, my lashes, some of my leg hair, some of my armpit hair. Just random hair everywhere was just missing.

I took it a little bit harder than probably most people, because like I said, they are a big part of me. A big part of what I like about my face.

When they were missing, I felt kind of ugly. I felt naked. I felt just not myself. I was looking at myself, and I didn’t even enjoy doing makeup anymore, which is something that I do enjoy a lot.

I love doing makeup, and I wouldn’t even enjoy doing it anymore because I couldn’t wear mascara, and I couldn’t curl my lashes. That was when I first started learning how to put on fake lashes. Now they’ve grown back a lot, but I still like fake lashes.

Mental, Emotional, Financial Support

Survivorship brings its own challenges

I remembered feeling alone all the time, especially in the hospital. Because my brother was working, he couldn’t come. My parents couldn’t come all the time.

A lot of my friends and family didn’t come after the first round of chemo. That was when I had the most people come in to check on me.

After they heard that I was in remission and I was okay, they were kind of like, “Okay, she’s fine. She doesn’t need our support.” But I still needed their support, and nobody was really there. That was the hardest for me personally.

I had to kind of toughen up and realize that not everyone’s gonna be there for you. Not everyone is going to care the way that you think they should.

That was really hard for me to come to terms with and to kind of be like, ‘Okay, I need to stop expecting so much from people who don’t care as much as me.’

Of course people care. I’m not gonna say that they don’t, but they just don’t care to a level that I think that they should.

I need to stop having that kind of expectation of people. I learned to just rely on my small group of people: my parents, my brothers, a couple of my close cousins, and my best friend. That’s it. Those are the only people that I rely on. Those are the only people that I talk to when things are bad.

Other than that, I won’t care about anything for anybody anymore because, like I said, not everyone is gonna care in a way that I think they should. That was my problem.

If you’re lucky enough to have a community and have their full support, hold on to them. Not everyone’s going to message you. Not everyone’s going to text you and ask you how you’re doing. People have their own lives happening. That’s okay. That’s just life.

Were you able to reach out to people to ask for help?

At the beginning, no. I could not ask for help from anybody. I wanted to do most of this alone. It took me about 4, 5 months to even make a GoFundMe to ask for help.

In the beginning, I should’ve been like, “I need help. [I need] to ask people for help.” It look 4, 5 months for me to finally be like, “You know what? I do need this help. I’m gonna need help when it comes to moving to San Diego, medical bills, treatments, stuff like that. I need to ask for help.”

My brother finally convinced me to make a GoFundMe, and I was able to get some support, which I’m extremely grateful for.

Any advice for others in your shoes?

In the beginning, I didn’t want to bother people. That’s something that I would say a lot of people need to not do. Ask for help if you need it.

From your family, from your friends, from people on Facebook, people on Instagram. If you know that there are people out there who are willing to help, go for it.

Paying for cancer treatment (financial toxicity)

I still get medical bills to my house that I can’t afford. I’m hoping some day in the future when I’m more financially stable, I can pay them back.

As of right now, they just continue to send them, and they just pile up in the corner of my house because it’s just not something that I can afford right now.

There’s a lot cancer patients can’t afford right now. It’s really unfortunate that we have to pay back something that saved our lives, but at the same time, that’s life. You have to pay back for everything.

That was the hardest part because we were definitely a lower-class type of family. My dad has a job, but it’s not anything special. My brother doesn’t live with us. He makes his own money. He’s financially stable, so that’s his money. We don’t have any means of having all this extra money to just throw behind it. We have the necessities, and that’s all that matters.

The insurance I had when I first got diagnosed didn’t cover my medical bills. It wasn’t until I had switched to the different hospital and I got switched to full Medi-Cal that now they paid off everything from this other hospital. But all of my previous bills from [the first hospital], I couldn’t pay for them.

Talking to others about similar situations who have been through the same thing or something similar is so much relief off your shoulder and off your chest. Just know that you’re not alone in this, and that’s something that I would definitely say.

Do it from the beginning. I looked up patients’ stories, and there’s people out there with leukemia who have shared their stories on YouTube. It’s just like talking to a friend. It’s like talking to someone who knows what you’re going through, that isn’t going to judge you or isn’t going to give you that “wow, I’m really sorry, that must suck, can’t relate” vibe or situation.

Be open. Be honest with what you are feeling. Don’t try to sugarcoat anything, don’t give yourself this fake kind of presence of, I am super happy.

Of course, I am happy to be in remission. I am happy to be alive. I’m happy that the bone marrow transplant is working and that I am better, but at the same time, it’s still very traumatic. It’s a very traumatic experience to have to go through this.

Especially when you are this young, because you have your whole life ahead of you, and then it gets put to a halt. It’s like, “Nope not anymore.” You thought you were going to be a college student? Nope, now you’re going to be a cancer patient.

It’s something that you should definitely not try to hide. You should not try to suppress your feelings. Be open with them. Be honest. Tell people. Talk to people. You seek counseling, and you seek medical help, but depression, anxiety, there’s nothing wrong with it.

Go out there and get the help that you need and deserve and think about your well-being first.

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Acute Myeloid Leukemia Stories